Patient-reported outcomes via electronic health record portal vs. telephone: process and retention data in a pilot trial of anxiety or depression symptoms in epilepsy

Objective: To close gaps between research and clinical practice, tools are needed for efficient pragmatic trial recruitment and patient-reported outcome(PROM) collection. The objective was to assess feasibility and process measures for patient-reported outcome collection in a randomized trial comparing electronic health record(EHR) patient portal questionnaires to telephone interview among adults with epilepsy and anxiety or depression symptoms.

Results: Participants were 60% women, 77% White/non-Hispanic, with mean age 42.5 years. Among 15 individuals randomized to EHR portal, 10(67%, CI 41.7-84.8%) met the 6-month retention endpoint, versus 100%(CI 79.6-100%) in the telephone group(p=0.04). EHR outcome collection at 6 months required 11.8 minutes less research staff time per participant than telephone (5.9, CI 3.3-7.7 vs. 17.7, CI 14.1-20.2). Subsequent telephone contact after unsuccessful EHR attempts enabled near complete data collection and still saved staff time.

Discussion: Data from this randomized pilot study of pragmatic outcome collection methods for patients with anxiety or depression symptoms in epilepsy includes baseline participant characteristics, recruitment flow resulting from a novel EHR-based, care-embedded recruitment process, and data on retention along with various process measures at 6-months.